Death of the Syndrome

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That seems the most valid criticism.



In that sections, he does not seem to give any valid answer



For what I have read, there is indeed a gray area between "autism spectrum" and "non-autism spectrum", but seems to be a more clear distinction that in the autism vs. asperger thing.

As I read it, he is saying that there is a long history of definition of Kanner type autism and Aspergers type autism emerged as a defined thing because of a need to name a recognized distinction. He recognizes that the criteria are imperfect, but maintains that there is a distinction to be made. The phrase about questioning the general level of expertise was in reference to the collective level of a group of 400, not any specific individual's expertise and the specific point was that the way the two were defined should not have permitted an individual to be diagnosed with both disorders and yet they were. The argument is that they only meet the the same criteria if you are misreading the way those criteria were intended to be interpreted. Perhaps this is incorrect--I really don't know--but it is a real critique, not an ad hominem attack.



For what I have read, there is indeed a gray area between "autism spectrum" and "non-autism spectrum", but seems to be a more clear distinction that in the autism vs. asperger thing.[/quote]
As I understand it, it's not "Autism vs Aspergers" because Aspergers is/was seen as a flavor of autism. it's "Autism Disorder" vs, "Aspergers Disorder" and some very experienced, seemingly very perceptive clinicians with whom I have discussed this question have all asserted that there is a real difference there and that difference will remain, regardless of changes in nomenclature. Perry's argument seems to be, "we have an imperfect definition, but experienced diagnosticians know it when it they see it." It's not a very elegant situation, but not a totally invalid observation.

Until we get reliable diagnostic tests that expertise is really what we have to rely on. If people with that expertise are saying this change in categorization is not helpful, there may be something in it.

I think the historical argument is wrong, or at least misguided. It seems to me that what Lorna Wing did was introduce the concept of "Asperger's Syndrome", as autism that does not present in terms of late or no speech, and does not appear to involve intellectual impairment, so that autistic people who were neglected because they did not fit into the fairly rigid, narrow conception of "autism" would no longer be neglected. This does not seem to me to actually identify a "separate condition" so much as more diversity in presentation than was previously understood. And current understanding is moving toward (or already at) the point where it's seen that there are many possible autisms, and they do not necessarily match up with diagnostic labels that existed previously.

It might also help move away from misconceptions such as "if you have superficially competent speech, you have no language or communication impairment." And maybe also using presence or absence of speech as a defining point and neglecting other issues or even assuming they do not exist. Or simply labeling AS as mild even when it is anything but.



The comment in question was probably a response to professionals and Aspies complaining that they'd experience the same negative stigma that autistic people experience. His response seems to indicate that he does not believe there is any negative stigma associated with the "autism" label, which is kind of astounding to me given how much negativity has been attached to the label - often by professionals.



This is supported by more than one study, and Tony Attwood even discusses this in the Complete Guide to Asperger's Syndrome. I think he also mentions that the options are to stop using AS as a separate category or create more specific criteria to diagnose AS. I think that the latter has been done to the point that people have created a wide array of contradictory criteria that are supposed to distinguish AS and autism, but which tends to cut right across people's real lives and experiences.



No one is saying the distinction needs to go away. What they are saying is that the distinction doesn't appear to lead to the conclusions that many people want to hold onto (that AS is really a separate thing from autism, rather than the label being applied to a population with a lot of overlapping features, many often dismissed or ignored as self reports).



No one is saying that someone diagnosed with AS is exactly like someone labeled with LFA, and I would argue that it would be extremely difficult to find two people with the same diagnosis who are exactly like each other in terms of symptom presentation and experiences.

As far as childhood experiences go, over the past few years I've found I share some experiences with children who were at some point labeled as high functioning autistic, some labeled as low-functioning autistic, some who at least self-describe or labeled as moderately functioning autistic, and some who were labeled as having Asperger's Syndrome. The only trait that I have that seems to obviously mark me as separate from those diagnosed with autism or many with PDD-NOS is that I started speaking full sentences at 10 months - quite early.

On the other hand, I share experiences of learning to use language with people who did speak later, such as heavy scripting, inability to sustain a conversation, learning how to "mimic" language competence without truly having language competence (that is, using words and phrases by pattern matching them to what I hear or read, rather than using them based on meaning). Over time that has become less and less of an issue as I learn how to use those words, but this seems to be a common experience among those who were hyperlexic as children, and I was hyperlexic as a child.

Except in those like me who had one half of a speech delay (did not say a single word until around age 2, then started speaking in full sentences) and they could not decide if I were AS or HFA. I fit both categories. (HFA more in some ways and AS more in others)
I am happy it's more visible (to outsiders) that we're all autistic now.

This is one of the reasons because I that that passage of Richard Perry does not make much sense: faced with a study saying that most individuals diagnosed with AS or PDD/NOS meet the criteria for Autistic Disorder, his answer is "It is surprising to me that many clinicians could diagnose individuals with both Asperger's Disorder and Autistic Disorder"; what those answer have to do with the original point? I suspect that he even did not understand what the point was. I admit that the words of Dr. Happé were not the best - instead of "most people with Asperger disorder do meet criteria for autistic disorder", she should have wrote "most people diagnosed with Asperger disorder do meet criteria for autistic disorder", but anybody with a minimum of familiarity with the asperger/autism controversy should have understand the meaning

Wing explaining why she invented the label Asperger's Syndrome:



Apparently, the concept of "Asperger's Syndrome" was, basically, a PR stunt.

I do think we should listen listen to each other a bit more as I understand what Adamantium says about needing the distinctions; we are completely riddled in subtypes of autism with not enough names right now. Hopefully that won't matter when they start seeing individuals for who they are. It's not his fault the definitions that exist right now doesn't work or accurately describe us...

Ok, I only have a little knowledge of this, because it's been an interest for a few months and before that I knew next to nothing about Autism (I did see "Rainman" and some science shows about autistic children that discussed only classic Kanner type autism.) I his argument is in this form:

That proposition is that Autistic Disorder and Aspergers Disorder are the same thing.
A survey of Australian practitioners of variable background is presented as support for this porposition. The survey results indicate that nearly half of those diagnosed with Aspergers or PDD-NOS met the criteria for Autistic Disorder.
This should not be, says Perry, because the disorders were defined to delineate different things. In the terms that were provided, there may be a lot of overlap, but there were some features that distinguished the disorders (e.g., language delay) Given this, the survey results make no sense. I think he is saying that within the logic of the historical development of the DSM, there was a distinction that should have been made and this high percentage of people diagnosed with one disorder but equally well described by the criteria for the other should not exist. That is when the "general expertise" comment comes in: Perry is suggesting that the respondents must not have been using the criteria correctly. I think he understands Dr. Happé' but disagrees. Maybe this part of the argument comes to close to just restating the opposing viewpoints--but it does make sense.

Not exactly. It would be more nearly accurate to say that both labels together describe an overlapping grouping of many similar conditions that are difficult to distinguish from one another.



This is not an isolated study or result, however. Others have come to similar conclusions. There's a lot of support for this.



When faced with data that does not agree with one's assumptions, one has the choice to incorporate that data, find a way to refute that data, or simply reject that data. Perry appears to do the third thing - and I think he is wrong to do so.

Read the Lorna Wing quote that TPE2 posted. It is at odds with Perry's statements - and his stated understanding of how the different diagnoses came to be.

His sarcasm about tools is also off the mark, as there are quite a few tools that are helpful in identifying and diagnosing autism spectrum disorders. One is considered the gold standard for research and diagnostic purposes - the combination of ADOS and ADI-R. The point is that it is easier to identify someone as autistic than it is to identify whether one should be AS or autistic. That Dr. Perry claims there is a clear distinction fits into other research that shows that different clinics and professionals have their own standards that they consider accurate for making the distinction, which may or may not actually be somewhat consistent with the AS vs. autism criteria in the DSM-IV.

As far as it goes, it is actually very difficult to meet the strict criteria for AS in the DSM-IV for a couple of reasons - one is that many people diagnosed with AS meet the autism criteria for communication impairment, and the other is that it specifies no delay in self-help or adaptive skills. Many people diagnosed with AS have delays in both.

There have been a lot of studies on distinguishing AS and HFA, and most of the results are that there is greater verbal ability in AS as a group vs. HFA as a group, so the thing that distinguishes AS and HFA in research is the thing that clinicians use to differentially diagnose AS or HFA, the language delay.

Sometimes, there are studies that show a different pattern of abnormalities in the brain in AS as a group and HFA as a group, e.g. motor abnormalities in HFA are caused by cerebellum abnormalities, while those in AS are caused by differences in different brain networks.

Sometimes, there are studies that show that HFA has abnormalities not found in AS, e.g. certain perceptual differences present for HFA vs. NT, but absent for AS vs. NT.

But generally hard to distinguish AS vs. HFA.

Some researchers have suggested that distinction is not between AS vs. Autism, but between HFASD (HFA + AS + even BAP) vs. LFASD (including what is called "complex autism" that is caused by certain genetic mutations and associated with certain named syndromes and is not considered pure autism by researchers who mostly want to study HFASD which is considered pure autism).

Interesting.

I'm very interested in this - how does it present differently? Or does it look the same and they've found out that there were different causes?
I've seen some things listed as HFA only or AS only and I have both.

Most of the studies that I saw were not about clinical presentation, like clumsiness as differentiating disorders, but more like brain/neuroscience studies involving tasks made up by researchers to test for motor deficits caused by cerebellum or other.

That wasn't a challenge to what you said, I understood what kind of studies they were. I just wanted to add this and then hear what the differences are! But nevermind, I'll look for myself. Thanks for bringing it up.

EDIT: Sorry, but whenever someone brings up that these are two incompatible variants of the same thing I want to curl up in a ball and whimper as I haven't got an answer to what I am yet and want someone else to calmly explain it to me as being curled up in a ball is not very good for doing research. But I see now how this happened: My mom is more aspie, my dad more HFA. And I say "more" not because they are especially NT, but because they too are mixed. I've seen this before in an aspie-forum for my country, so many were basically both. Genes...

Thanks for the clear explanation. The Lorna WIng quote is very interesting.

It's a weird time to have just received a diagnosis.

When people I have told ask me what it means, I say "It's a kind of autism. I don't quite understand what it means. It's complicated and I think it's all going to change rapidly from now on. Basically, I have trouble making and keeping friends and I get really passionately interested in a few things and research them deeply. I also have hypersensitive senses and that has something to do with it"

Do you mean that you don't know if you have AS or HFA, and this makes you want to curl up in ball and whimper? But there are no reliable distinguishers other than language delay in childhood, which is not required for autism diagnosis, but most people diagnosed wtih autism seem to have had it.